Being Rare Podcast

Author: Sarita Edwards

Hosted by Sarita Edwards, Being Rare highlights the unique perspectives of individuals living with rare diseases. Through intimateand sometimes difficultconversations, we explore the challenges and triumphs of navigating everyday life with a rare diagnosis. Popular for our one-minute episodes, this talk radio-style platform addresses critical issues such as health equity, access to care, and mental health. We're not just patient stories, we're the patient experience! Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!
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Language: en

Genres: Business, Non-Profit

Contact email: Get it

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iTunes ID: Get it

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Ep 106. Being Rare and Black: A Rare Disease Day Exclusive
Saturday, 1 March, 2025

In this episode of the Being Rare Podcast, Sarita sits down with James Griffin and Genesis Jones, patient advocates and authors. We're talking about navigating life with sickle cell, healthcare bias, stigma, and more!The books mentioned in this episode can be found on Amazon. Direct links are below.Breaking Silence: Living with Sickle Cell Anemia by James Griffin III https://a.co/d/3znpc3sRebirth: A Sickle Cell Warrior's Crossover (Warrior's Sickle Cell Poetry Collection) by Genesis Jones https://a.co/d/3lVQL7ZResilient: Reflections of a Sickle Cell Journey (Warrior's Sickle Cell Poetry Collection) by Genesis Jones https://a.co/d/73XsFla